writing

Real Cripples Don’t Need Lanyards

Yesterday morning, just as I was preparing to go out, I caught an interview with Jake from The Traitors on morning TV. As you may remember, Jake was a finalist in the Traitors who has comparatively mild Cerebral Palsy. However, his CP is so mild that he was able to keep it hidden throughout most of the show. As I said a few weeks ago when the program aired, something about that does not sit well with me: He was saying yesterday how CP is actually fairly common, and that a lot of people have it but it’s so mild that others might not realise. He then went on to explain how you could wear a special, flower-adorned lanyard to let people know you identify as disabled.

I’m sorry, but if you need to wear a lanyard to tell people you’re a cripple, you’re not a zarking cripple! Cerebral palsy, like all disabilities, should be obvious: if you have it, it effects your ability to walk, talk and move, albeit to varying degrees. In my case, people can instantly see that I have CP, which is why most of the time strangers treat me like a five year old. If someone’s CP is so mild enough they can hide it, I don’t see the point of them saying they have it in the first place. If they can walk, talk and move like anyone else can, to the point that nobody notices and it has no discernible impact on their lives, how are they disabled? Frankly, it’s like a white, middle class person claiming to be black because one of their great, great grandparents was black, then going on to claim to share all the oppression and racism black people suffer. It may be currently politically and socially fashionable to be seen as a member of a minority, but such cultural intrusion is becoming increasingly widespread and increasingly perverse.

Perhaps I shouldn’t be so negative and grumpy; ultimately it’s great to see a disabled guy getting so much media attention for once. Yet a voice in the back of my head keeps asking: did Jake go to special school? Did Jake get a second rate, half-arsed education because everyone assumed he’d never achieve anything? Did Jake have to watch his classmates die one by one? Can Jake only go into certain buildings because his wheelchair can’t go upstairs? Do people assume Jake has the mental ability of a doormat and treat him like a toddler? Does Jake experience a plethora of other hardships on a day to day basis, but has to just accept them as the way things are? Because if he doesn’t, he has no right to usurp the identities of those of us who do for his own gain.

The Rise of Vlogging

I’m very proud to have kept my blog going for over twenty years. I think I’ve said here before that I see it as my primary output as a writer, recording my thoughts, observations and experiences from day to day. I started blogging when blogging was more or less in its infancy, and still primarily a practice confined to writing. Internet users had to visit your blog to read what you had written.

These days, however, the online landscape is very different. Vlogging on websites like YouTube seems to have exploded, and is probably now bigger than straightforward blogging ever was. I hardly spend any time on YouTube without encountering a vlogger; that is, a person expressing their thoughts and reflections directly into a camera, or filming something that they want to express to viewers.

This evolution of blogging interests me. It is, at the same time, an extension of blogging in that internet users are expressing their thoughts to other internet users; and also fundamentally different from it.

Blogging can be seen as a form of writing; and writing is an art, as it always has been. It takes a certain amount of skill to construct sentences and write them down to form a coherent statement. Obviously some entries take more effort and skill than others, but on the whole I try to put at least a little thought into what I write here. Vlogging, on the other hand, seems to now be more a matter of pointing a camera and pressing record. 

There will naturally be advantages and disadvantages to this, and it isn’t my intention to sound too negative. While I have continued to express myself through writing as I cannot physically use cameras or speak clearly enough, vlogging has obviously made expressing yourself on the web much more accessible. For most people using a webcam or camera phone is much easier, quicker and simpler than sitting down and writing something. You could even say it was a step towards the democratisation of blogging and online expression, as such a simplification allows a more diverse range of views to be expressed.

However, I’m starting to fear that that very opening up has meant far more reactionary, less thought through opinions are now being broadcast. Vlogging is simply a matter of speaking into a camera and uploading the results to huge websites like YouTube, meaning that anyone can record anything they like and it will be available to the same audience as any other online video. I am thus now coming across far more reactionary, less educated or nuanced views online. Whereas a blog entry, like any piece of writing, can be drafted and redrafted, resulting in a more refined end product, the videos I now come across are far rougher and unedited: someone has simply spewed a stream of right wing bile into a camera and put it online for all to see without a second’s worth of real consideration. Such spewings are becoming more and more reactionary, deranged and intolerant, as vloggers vie to attract attention. And because of YouTube’s search algorithms, the chances are it will reach a far bigger audience than anything I write here!

A lot of what is uploaded to YouTube these days is absolutely outstanding, and I’m seeing more and more pieces of very refined, technical filmic art. There are thousands of highly skilled, intelligent filmmakers on YouTube. They all naturally have a right to express their own points of view, whatever they may be. Yet alongside them are an increasing number of talentless hacks with absolutely no technical skill, uploading whatever reactionary right wing bile they like and demanding it receives the same attention as anything else. Websites like YouTube have certainly opened up and diversified public discourse; but in so doing it has encouraged a lot of bigoted, uneducated voices to be raised out of the rotting rhetorical cesspit that they would have been confined to before now.

VIVAs and VOCAs

I saw my big brother Mark yesterday, for the first time in quite a while. He’s over briefly from France to help conduct a PhD viva, staying at the old family house in Harlesden with my parents. Mum thought it would be nice if I went over so we could all have dinner together. Needless to say, it was a wonderful meal: I hadn’t seen Mark in such a long time it felt absolutely fantastic to catch up with him. My niece and nephew, Oliver and Elise, are apparently doing well at school, and Mark seemed as dazzlingly bright as he always has.

Mind you, all the talk of a PhD viva across the dinner table once again made me ruminate on whether I ever could have done one. Of course, my masters took me so long to write that I decided to call my academic career a day after I finally completed it. I’m still extremely proud of my MA, but the question remains: could I, as someone who uses a communication aid, have done a PhD Viva? A Viva is a sort of examination where the examiners ask the candidate questions about the thesis they have written directly, so there’s a lot of talking involved. That’s obviously usually verbal, but could it be done with a Voice Output Communication Aid? It would probably be a very slow process: having to type out an answer to any question put to me would have taken quite some time, especially if the answer required any detail or substance. I strongly suspect that, before long, I would have become very uncomfortable and needed a rest.

To tell the truth I don’t think I’ve come across a record of a person with my level of CP doing a PhD. My Australian friend Darryl has one, but he is able to speak normally. I’d be very interested to see if anyone who uses a communication aid has done a PhD. As for myself, my 40,000 word MA thesis still sits proudly on my shelf; yet that faint niggle of curiosity at what might have been and what I could have achieved is still there. Oh well, I suppose that, at the end of the day, I still have time.

We Are Being Trolled

I know I touched upon trolls a few days ago, but it seems to me that they are becoming more and more virulent. I was just watching the morning news, when it struck me that we are all being trolled. On the internet, a troll is someone who posts controversial or inflammatory content into a forum to get attention or stir up trouble. They deliberately wind people up for their own amusement. I see it all the time, particularly with respect to ‘debates’ like the shape of the earth, where people seem to want to argue black is white that the world is flat, just to perpetuate the debate. Their arguments are getting sillier and sillier, more and more absurd, merely to stir people up and get them to respond.

However, it seems to me that we are all now being trolled on a far broader scale. This morning note how Elon Musk has tweeted all kinds of rancid, baseless bullshit about Labour and Starmer etc; we see guys like Trump and Farage doing something similar. Isn’t it obvious that they’re just trying to wind people up and get attention. They want people to react simply to pull the focus onto them. In the press conference the PM gave earlier about the plans for the NHS, half of the questions from the media concerned Musk, simply because he had posted an idiotic tweet.

Thus people like Musk, Farage and Trump are effectively nothing more than internet trolls, and would just be ignored if we collectively had any sense. The more we fail to do so, the more we feed their craving to be the centre of attention, and the worse and more inane their spewings become.

The Room Where Time Stops

I suppose I have a pretty strange relationship with the front room of my grandparents house in Harlesden. I vaguely remember that when I was five or six, I used to be reluctant to go in there, preferring to play in the back room or the passage next to it. The front room was slightly too smart for me and my brothers to play in.

Yet, sat in that very room with my parents as we opened our presents this morning, I couldn’t help feeling utterly astonished: on the walls around us were photographs of four generations of my family, spanning about seventy years of history. On one wall are three framed black and white  photos of my mum, aunt and uncle. Probably taken some time in the sixties, my mother looks about ten – a smiling, exuberant,  bubbly young girl.

Opposite that wall though, on a table by the front window, now stands a beautiful glass photograph of my niece and nephew which my parents opened just this morning. They  both bear the kind of cheeky, fun filled smiles that only children their age seem capable of; it’s a beautiful, beguiling picture which I found staggering when I first saw it earlier, astonished at how quickly my niece and nephew are growing.

That glass photo now sits on a table next to an electric photo frame sent by my other brother Luke, showing a montage of pictures of the newest member of our family. Elias is now around thirteen months old, and also growing rapidly. The photos reveal a young boy so full of life, for whom the world is still so boundless and captivating.

On the third wall of the room and on the mantlepiece above the old disused fireplace, are various other photos of other members of our family. There are two of my Greek Cypriot grandparents, my Yiayia and Bappou, looking just as loving and caring as I remember them to be when they lived here and we used to come to visit them. There is also one of them on their wedding day, taken before anyone here today was born. And there is also a photo of myself, my brothers and cousins – their grandchildren- as a group, probably taken when we were last all together.

Looking at the pictures on these three walls, they inevitably remind me of the unstoppable passage of time. My grandparents are no longer with us, and my brothers and cousins are in various places around the world, as far afield as Brazil. Yet here in this north London house is where that all started; where, over seven decades, three generations have been raised with warmth and love. Time, of course, can never stop,  just as my brothers, cousins, nieces and nephews should never stop heading out into the world;  but the pictures on the walls of the front room capture moments in time which bring the family together again.

I’m a ‘Cyborg of Necessity’, Apparently

One of the first things I came across when I started browsing Facebook this morning was this very interesting academic paper by my friend Darryl Sellwood, et al. Darryl is fast becoming a great disability studies academic and writer, who I must admit puts me to shame. The paper broadly argues that the choices and decisions surrounding Alternative and Augmentative Communication (AAC) should be primarily made by AAC users; that is, people who actually use communication aids should be the primary voice in the future of the field, the rules, customs and habits surrounding it. I find that perfectly obvious, and it gets no argument from me.

Reading the paper, though, I came across quite an interesting phrase which stuck in my mind. The text seems to switch from area to area quite a bit, presumably as it goes from sections written by one of it’s five authors to another. One of the authors refers to AAC users as ‘cyborgs of necessity not choice’, a phrase which resonated with me quite a bit, and which I think needs exploring. In my 2014 MA thesis, I touch briefly on how the equipment I use to communicate and move around could be said to evoke Borg implants. The Borg are, of course, the cyborgs of Star Trek. When I was writing my thesis, I think I meant this as quite a cute, throwaway remark; yet I am obviously not the only person to pick up upon the correlation. Does the use of specialist equipment by disabled people really render us cyborgs? What could the sociocultural implications of that be? Could we really seem like the hostile, unfeeling drones bent on assimilating every other lifeform which Star Trek depicts? After all, most mainstream science fiction franchises frame cybernetic organisms, from The Borg to Darth Vader, as some form of aggressive, malevolent enemy. To be honest being called a cyborg, albeit one of necessity, throws up a few quite dark implications and connotations which aren’t all that comfortable, yet which I think need looking a bit deeper into.

Happy Retirement Mrs. Hickson

I came across some news which I think is quite astonishing last night. On my old school’s Facebook page, I saw that Chris Hickson was retiring. That was a name I hadn’t heard in a long, long time: Mrs Hickson is – or was – the Speech and Language Therapist at Hebden Green. One of my very earliest memories is of her coming to the nursery department of school to take me to her office for our weekly sessions. I must only have been four or five at the time; the sessions were one-to-one, as I was the only kid in my class who needed speech therapy.

My weekly meetings with Mrs. Hickson continued throughout my time at school. If memory serves, they were often basically just chats, where she would just encourage me to speak. This was long before I got my first communication aid, so it was obviously important to get me to talk as clearly as possible. We used to talk about absolutely anything, especially my favourite books at the time. Obviously, Mrs H would then structure exercises for me around those subjects, but I remember sessions with her being fun and engaging.

Once, getting into her office, I threw my school bag onto the floor before sitting down. I was at the age when throwing things around seemed like a fun thing to do. I remember Mrs. Hickson looking quite aghast at me: “Matthew,” She said, “What if that bag contained a communication aid? It wouldn’t be a good idea to throw it around like that if it did.” At the time I didn’t feel very concerned, but I can see now that it was the beginning of something which would become far more significant for me.

Indeed, it was with Mrs. Hickson’s help that I was given my first Lightwriter. It was a relatively primitive device, compared to the communication aids we’re using now, but it completely revolutionised my life. I was suddenly able to talk to anyone and everyone I wanted, not just people who knew me well enough to understand my speech. The first morning I got one, I remember going up to shop keepers in Macclesfield and asking them for all kinds of bizarre things. It was like a whole new world had opened up.

Obviously, it was only because I had this new ability that I could do all kinds of things which would have been difficult previously, like going to the comprehensive school next to Hebden for GCSE english classes. That then lead to me going to college, then university, and eventually moving down to London. That would simply not have been possible had I not had a communication aid: talking to anyone like Esther, Charlotte, John, or the guys over in Tesco, would have been off limits. These days I use my communication aid daily; it is essential to me. The last twenty years of my life could not have happened had I not had the ability to communicate with other people efficiently.

All that is ultimately thanks to Mrs. Hickson and her foresight. I am thus highly indebted to her. No doubt she has helped countless other young people in similar ways. Frankly, given that I left school over twenty years ago, finding out that she is only just retiring yesterday struck me as astonishing. Indeed, Mrs. Hickson had been working at Hebden since the seventies: her legacy must surely be incredible. In many ways, it is because of her that I lead the life I now do, trundling around South-East London, talking to all kinds of people; going into shops and asking for all kinds of things. I therefore wish Mrs Hickson the happiest of retirements. Most of all, I’ll always have fond memories of our weekly speech therapy sessions back at school.